Newbie MAC caregiver with questions

Bruce has done the treadmill test. He's also had several lung function tests and every time we have pulmonology appointment he has to take a 15 minute walk with the PA while monitoring his oxygen levels. It's been brutal for him. Levels fluctuate but never lower than 93 with some as high as 100.
Yes to the water. His lungs are overwhelmed. He has a cavity or hole in one which doesn't help the healing process.
As for what I do for myself? Read, walk, work in my garden, spend time chatting or visiting with my kids who live nearby with their lovely spouses. I am not quite ready for a rubber room. 😉

Hi, Melissa-

I was diagnosed with end stage bronchiectasis in my right middle lobe in October of 2020. I was also very active before the diagnosis. I was able to go NJH in October of 2021 and again in March of this year and have been so pleased with the level of care I have received there.
I do not have an NTM but did have bronchiectasis so progressive that it had replaced my entire right middle lobe.

When I was at NJH in 2021 they did a bronchoscopy and found an AVM or Vascular Lesion on my airway. This was not seen on any of the three CT scans that I had previously. When I returned this year miraculously, my right middle lobe looked much better. I have been diligent with Levalbuterol, 7% saline and airway clearance twice a day. However, despite that portion of my lung looking better and my oxygen levels being within a normal range I am still having to decrease activity. Is it possible that Bruce may have a pulmonary AVM that has not been diagnosed? If you read about them they can cause shortness of breath. Which I think is what is causing my decrease in ability to exercise and be active.

I am going back to Colorado at the end of the month to have my right middle lobe removed and with it the AVM that is on my airway. The surgeon said my lung looks well enough now that if that was all he was looking at he would not operate but the AVM is a ticking time bomb and if it were to burst would drown me.

I know there are many other things to consider since he is dealing with NTM but this just sounded so similar to my decreased ability to be active that I wanted to mention in to you. Especially, since it was only seen through the scope and not on a CT. I was lucky that I had my bronchoscopy at NJH and my pulmonologist there knew that the lesion looked suspicious and did not try to biopsy. Instead he sent me for a second diagnostic bronchoscopy with an ultrasound that identified the AVM.

Sending positive thoughts your way that you find answers and Bruce is able to resume his regular activity.

Hats off to you as a superb wife. My husband has been such a support to me so I know how much it means to have someone standing by your side and having to deal with most of the day to day things that make this world go round.

Thanks for the helpful information. My husband has been scanned a couple of times for possible blood clots in his lungs, thinking that might be causing the SOB. Nothing has been found to date. I will put AVM on our potential issues list for our pulmonology appointment next week.

Bruce has a number of peripheral issues largely unrelated to MAC or Bronchiectasis but which impact his breathing ability. He has esophagitis, the result of radiation treatments 10 years ago following the removal of a malignancy between his lungs and heart (a thymoma which is a very rare tumor in the Thymus gland). He also has Barrett's esophagus, the result of asymptomatic GERD.

My guy is a survivor and keeps all of his doctors, and me, on our toes. And you're right about the support. We prop each other up and keep laughing at the world's ironies as we bumble along.

Thank you for sharing your story. Keep taking good care.

Hi Echo, I'm glad to hear they found the AVM. Do you have them elsewhere as well?

The good news is that my friend had one when we were 29, lost one entire lobe, and we're preparing to celebrate our 71st birthdays this summer!

Sue

Hi, Sue~

So happy your friend is still around. Thank you so much for sharing. It makes me hopeful.

Of course, once I found out that I had an AVM I put my googling fingers to work. I think the main focus right now is to take care of the one AVM before it causes any other problems. I am so hoping I will feel better once that lobe and the supply to the AVM is gone. It has been frustrating knowing that my lungs look better but I feel worse. I am assuming since I have not had symptoms of one anywhere else that they are thinking it is the only one. I am not anemic so I don't think I have any bleeds going on anywhere else. However, once I get this surgery behind me I plan to ask about genetic testing for HHT. I have been reading and only a low percentage of people have a pulmonary AVM and don't have HHT. I'm not sure if you would categorize mine as a pulmonary AVM since it is on the airway and not in the lung. My pulmonologist at NJH says it is the first he has seen on an airway.

Thanks for all your support, Sue. You are blessing to us all.

~Echo

Welcome to the group!
The 2020 NTM international guidelines state:
"We suggest that patients with macrolide-susceptible MAC pulmonary disease receive treatment for at least 12 months after culture conversion"
However, there have not been many studies on this time frame and it can vary depending on the doctor. It is not unusual to get a positive now and then and still work within the "12 month-ish" framework.
All the best to you,
Linda Esposito

That's helpful Linda, thank you.
We have an appointment on Friday with my husband's main pulmonologist. She suggested through an email exchange last week, that she may want to do more sensitivity or susceptibility testing due to the positive culture.
However she wasn't clear about whether we start over with culture conversions in response to Bruce's question. We'll ask again when we see her.
He does have a couple more cultures growing, with one result due in about 2 weeks. Perhaps they will flip back to negative. The side effects of the Big 3 meds, Arikayce nebulizer, and all of the breathing therapies are taking a toll so it would be heartening to receive some positive news.
Thanks again for your response and the nice welcome.
Melissa

In my earlier posts I shared information and details about my husband Bruce's MAC infection and treatments and asked many questions of this group.

Bruce had an appointment with his Johns Hopkins' ID/Pulmonologist on Friday and I am delighted to tell you all that the information and responses I got from this discussion group were extremely helpful in guiding us through what was a very tough couple of hours.

Bruce came away from the session saying he felt like he had been run over by a Mac truck, no pun intended.

But, it would have been far worse without the knowledge and guidance from this group that we used to upgrade our own MAC information.

The doctor listened to all of the updates on my husband's condition, asked and answered a lot of questions, and brainstormed some alternative treatment and testing options to perhaps get a better handle on why Bruce feels so much worse.

The Arikayce treatment has been suspended with the intent to switch to Amikacin in a liquid form that would also be inhaled through a nebulizer. The doctor suspects that the liposome suspension used in Arikayce may be irritating Bruce's lungs and attributing to his shortness of breath.

We hadn't heard of the liquid form for neb use, only the infused version which Bruce did at the start of treatment using a PICC line.

Has anyone had any success with the Amikacin liquid inhalation?

According to the doctor, the one culture that was positive for MAC (following 3 negatives and preceding what looks to be another negative) will undergo a sensitivity analysis to test for drug susceptibility. If nothing shows up we are keeping our fingers crossed that it was just an aberration.

The doctor is also trying to get the less acidic version of 7% saline for Bruce's neb treatments. I raised that (thanks again to this group) with the suggestion that less irritation on the lungs may also reduce the sob.

Thanks again for all of the constructive suggestions and guidance. This group is a blessing.

Melissa,
Great update on your husband. I moved your post with your update to this discussion where you were sharing about his sitution:

- Newbie MAC caregiver with questions https://connect.mayoclinic.org/discussion/newbie-caregiver-with-questions/

I did this because I wanted to be sure that @egayle187 @crepass @cmi @sueinmn @coco1970 @becleartoday @raney @rits @gej53 @migizii @cayenne @thumperguy and others who shared their tips and support saw your update and the high praise you have the knowledgeable and compassionate members of this forum.

You ask about Amikacin liquid inhalation. Here are a few related discussions that you'll find equally useful:
- Inhaled Amikacin: What works for me by @katemn https://connect.mayoclinic.org/discussion/inhaled-amikacin/
- Any good results from taking Amikacin?? and what were side effects? https://connect.mayoclinic.org/discussion/any-good-results-from-taking-amikacin-and-what-were-side-effects/

How is it going with the PICC line?

Thanks Colleen. I am glad you made the switch to the appropriate audience for my comments.

The information on inhaled Amikacin is very helpful and appreciated.

As for the PICC line, Bruce only had it for a month. Amikacin infusions had a detrimental impact, causing hearing loss and ringing in his ears. He was quickly switched to the Arikayce nebulizer and his hearing was restored. He still has ringing in his ears but it's less than it was.

Now, after 5 months of Arikayce neb use, his ID Pulmonologist is moving him to inhaled Amikacin (no liposome suspension) in an effort to resolve serious shortness of breath issues. Jury's out.